butterfly rash

May is lupus awareness month. Bringing publicity to lupus can make a difference in funding research and hopefully finding a cure. I knew nothing of lupus until I was diagnosed with it. Now it seems that more people are aware of lupus, at least on a superficial level. In my experience, folks have usually heard of lupus. However, they don’t know anything specific about the disease: symptoms, cause, or prognosis. Lupus is an autoimmune disease, there is no cure, and it affects mostly women. The symptoms vary for each person and can include extreme fatigue, joint pain and swelling, headaches, photosensitivity, Raynaud’s phenomenon, mouth and nose ulcers, fever, anemia, a butterfly rash across the cheeks, pleurisy, abnormal blood clotting, and hair loss. Lupus can attack only on the skin (discoid lupus) or the entire body (systemic lupus erythematosus), where it impacts the organs, joints, and body systems.

On a personal level, when is the right time to make others aware of your lupus? Sharing how you are affected by this disease educates others about lupus in general and also enables people to better understand your challenges and struggles.

The first four years after I was diagnosed, I kept my lupus mostly to myself. I only disclosed it to family members, a few close friends, and one of my supervisors at work. Dating was especially worrisome because well, lupus complicates life. Because of lupus I’m not able to do everything a healthy person can. No longer is a real suntan an option for me, my golden glow comes straight from a can. In addition to the physical restrictions of this disease, lupus has made me somewhat unreliable. My body is always on the verge of a mutiny, going into a lupus flare of extreme fatigue, a debilitating migraine, or malaise with joint and muscle pains.

When it came to dating, I worried if a guy would turn on his heels, high-tailing his behind out of my life, like Wile E. Coyote’s nemesis, the Roadrunner. Well, if he did, then to hell with him. I decided to share my lupus with any gentlemen I dated right from the start. (So basically I only had to share once a decade.) The scenarios usually happened as follows:

A guy would ask, “Hi, would you like to have dinner some time?”

My reply, “Sure, that would be great, I have lupus, here’s my phone number…”

Telling a guy right away eliminated any anxiety over what his reaction would be and the question of when was the “right” time to tell him. Sharing let him know what he was getting into.

Disclosing the fact that I had lupus with my employer and coworkers was another challenge. On one hand I needed to tell my supervisor about my lupus so he would understand why I called in sick occasionally and why I had so many medical appointments. On the other hand, I was afraid that I might loss my job. I kept my lupus a secret from my boss for as long as possible. Eventually, I had to make him aware because lupus was impacting my reliability and job performance. Fortunately, my supervisor was kind and compassionate, and he even shifted my workload and allowed me to work from home during periods when I was experiencing a flare. I was honestly surprised at the outcome and I kicked myself for not sharing sooner.

Whenever and whomever you share your lupus with is a very personal decision. While I felt anxious about revealing my lupus, after I confided with my family, friends, and employers, I was (and still am) amazed at the love and support I received. Now, I embrace every opportunity to share the fact that I have lupus. My goal is to bring awareness to this disease so others understand the symptoms, prognosis, and challenges we endure. I encourage you to divulge your lupus with everyone. Unburden yourself. I’m sure the majority of us have heard the dreaded comment of, “but you don’t look sick”. While there may be truth in that, you need to make others aware of what is going on behind the veil of your appearance. Let others know what you are going through so that you can receive support, help, love, nurturing, and anything else that can carry you through your lupus flares.

Looking back on my life, I distinctly see times where I experienced lupus flares and remissions, despite a lack of a proper lupus diagnosis. The flares always involved a visit to some doctor, who inevitably could not find a reason...

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